Graham - Interview 27

Age at interview: 47

Age at diagnosis: 22

Brief Outline: When Graham went to university he felt very sad and eventually tried to kill himself. He was subsequently admitted to hospital after an overdose. Later he got married and his life was 'transformed', but he became ill again after the birth of his son. He now works for the Highland User Group and lives by the sea.

Background: Graham works for 'HUG' (Highland User Group), is separated, and has a son. Ethnic Background' White British.

More about me...

Graham said he had ‘quite a good upbringing’. He moved around a lot as his Dad’s business necessitated this. He went to different schools and adapted to ‘different places in different ways’. Eventually he went to public school, and although he made a lot of friends there he would have ‘preferred not to have been away from home’. He didn’t enjoy sixth form and argued with his parents at this time. After this he had a year off and went travelling. Going to university he found he was ‘very self-conscious’ and was ‘terrified of women’, having spent most of his time apart from them. He got sad and had very few friends. He said he had ‘nothing to look forward to’ and eventually he tried to kill himself by cutting his wrists. Someone he was living with persuaded him to see the doctor. The doctor was ‘very warm’ and he was sent to a student hospital for a week; while there he saw a psychiatrist. He says that the only way he ‘could express what [he] was feeling inside was by cutting [himself]’.

 

Eventually Graham took an overdose, and was shifted from ward to ward while he ‘decided he was dying’. He was admitted to an old psychiatric hospital that was in the process of shutting down. He witnessed the neglect of other patients in the ward, and this made an impression on him. He was discharged quite quickly and ended up going out with one of the nurses on the ward. He went back to university and went to see a psychiatrist who had a ‘poor grasp’ of English and ‘specialised in silence’, so consultations were ‘painful’. At that stage he was told that he had a personality disorder. He had run out of the ability to study any more and hardly turned up to classes, but people at the university were very ‘patient’. He wrote poetry in his final exam. He volunteered in a half-way house for young people and met others with ‘like minds’. He was shocked by the experiences of people he knew who had been through mental health services, didn’t like the mainly hospital-based services, and considers that stigma was worse then than now. Around this time he was ‘barely speaking’ to his parents and blamed them for some of his distress, and says he was quite ‘ruthless’ and ‘horrible’ to them.

                                             

Then Graham helped sail a yacht across the Atlantic for his Dad’s firm, and fell in love with a woman who was part of the crew. He married her, and from then on life was ‘transformed’, being no longer about mental health but about ‘skiing […] walking […] rivers as well as picnics [..] about poetry and meeting people’. However, he was ‘full of doubts’ and was working too hard. He then had a son. Although having his son was a ‘beautiful thing to happen’ he wasn’t ‘prepared to be a Dad’. After that he ‘went into psychosis’ and ‘everything inverted’. He started thinking of harming himself and went to the GP. He thought evil spirits had poisoned his blood. He told his wife he had to go to the woods with razor blades. He was admitted to hospital under section and thought he was beaming evil thoughts and causing another woman to be suicidal. He found the large institution of the hospital very ‘bewildering’. He escaped from the ward into the grounds and cut his wrists again, but made a decision to come back to the ward. Although the nurses were sympathetic, a doctor made a point of saying that he wasn’t going to use anaesthetic when he stitched him up; he found this humiliating,. He was then put under special observations that were ‘awful’. Eventually he was allowed to visit the grounds with his wife, which he liked. However he hated Largactil and Haloperidol, and had incredible pain when he was in the sunshine; the medication stripped the skin from his throat. After hospital he was lost in a ‘very grey world’, although he started writing poetry and went back to work at the rate he wanted. Over the next couple of years he was ill a couple of times and was then diagnosed with schizophrenia. He used to think a diagnosis was ‘really useful’ and ‘made sense of an experience that other people didn’t have’ but now he almost rejects diagnosis as it ‘defines you’. Still now he really ‘struggles with his beliefs’. He has become ‘more dangerous to himself’ over the years. He is now on a Risperidal depot, which he finds different from the Depixol that gave him akathisia. He is now on a community compulsory treatment order. Over the years his work has helped him greatly, as has seen himself as ‘just Graham’ rather than a person with an illness. He does a lot of writing, not as therapy, and is very active with the Highland User Group, which has over 400 members.

  

When Graham first went into psychosis he thought about self-harm and went into some woods with some razor blades as he believed that his blood was poisoned and that there were evil spirits around him.

And this was when I first went in psychosis. Basically I began to stop sleeping. And accompanying that I couldn’t stop thinking and for the first time in years the thought of self-harm became really prominent in my mind again. And I told my wife that that was what I was thinking. And we went to see a GP who made an emergency referral to a psychologist who was going to see me quite quickly to see if we could do something about it.

 

And then it’s really hard to describe what happens. I wasn’t, I was just thinking, and thinking, and thinking, and not relaxing and then everything inverted. And half formed thoughts became very real. 

 

I began to think that... my blood had been poisoned by evil spirits and that I was evil, and that there were spirits around me, warping my thoughts and changing my thoughts, and that was very frightening and I didn’t know what to do with it.

 

And I think the worst thing I’ve ever done was one night when our son was in bed, and we were sitting down having a drink, I told my wife, that I had to go to the woods to get rid of the evil in my blood by cutting my wrists. And you know, it’s, it’s something that people don’t know how to respond to. So she just had to watch me walk out the door with razor blades. 

 

And... I went to the woods and again I’m so glad I’m such a coward, because I didn’t do much. But what my wife must have gone through knowing that I could die and not knowing why I was doing it. It must have been terrible. 

Graham used to think diagnosis was helpful as it was something tangible, but he now feels diminished by it, and thinks there are other ways of seeing reality.

I used to be clearer in my attitudes towards what we call mental illness. Now, I don’t know. I used to think a diagnosis was really, really useful. It was tangible, you could grasp it, you could either challenge or disagree with it or accept it. And it made sense of an experience that other people didn’t have. And now I almost reject the diagnosis because it feels like it defines you and it defines you according to other people’s values. And it can label you as a victim. You can almost conform to the stereotype of being a patient and what’s expected of you. You know, for the first time, all my life, you know, it’s now 27 years since I first came into mental health services and I never accepted I was a mental health patient, if you like, according to the stereotype. And now, you know, my, the people around me are wonderful who come and help me, but now I have no choice but people, if, if my nurse wants to come into my home, she’s got the right to. I can’t refuse it. 

 

And it’s not that I’m different I just feel like a patient. I feel diminished. And part of feeling diminished means that I want to reject what they’re saying about me. And also I do really struggle with my beliefs. They’ve never completely gone away since I was out of hospital this, this time, so the feelings of evil are quite strong in me, but I’m very contradictory. I talk about spirits and evils and devils inside of me and yet I’m an atheist. So it doesn’t make any sense. But I don’t like to dismiss, even if it’s true that my beliefs are caused by illness, I think there are lots of ways of seeing reality. And in a different world we might not call that illness. We might just call it a different way of perceiving the world. And it’s, I don’t think illness is just a tangible thing. Illness is defined according to our society’s judgement about what is right and what is this and that. What is ill and what is healthy. And in some ways I live a very healthy life at the moment, but I’m seen as ill, and I’m seen as sort of severely ill.

Graham learnt from others and through fictional and real accounts of personal experiences.

I feel at my most easy when I meet someone who I realise has at some stage or still is going through some of the experiences I’ve been through. Or at least has some knowledge of what mental ill health is. It feels like there’s a connection. And you can share all sorts of ideas then and learn from each other. Even if that learning is not conventional learning it gives you all sorts of sensors of your own self-identity and self-worth. And that’s how I find things out. I don’t tend to go to leaflets. It’s strange because we’re the sort of people who would do leaflets and things but books… I quite like books, which give either fictional or real accounts of what people have been through. I find those very interesting. 

 

But otherwise I don’t do a lot. I’m not caught on self-help and self-awareness and, no I don’t seek to be a person whose all about recovery. I just live my life and I live my life 

 

After leaving hospital Graham saw a psychiatrist who he thought was 'weird' and specialized in silence, but later he saw a better psychiatrist.

And what happened when you left the hospital?

 

Nothing much. I went back to university. What did I do? I was meant to see the doctor, so I would turn up to the doctor. And then I was meant to see a psychiatrist. And he was really weird. It was very strange. He must have been some arcane therapy, because I would go in and see him, and first of all we had a language barrier. We were from different cultures and he really didn’t understand much of my language. He had quite a poor grasp of English. So when I told him things he would get it wrong and I was quite inarticulate too, so it didn’t help him either. But he specialised in silence [laughs]. It was really weird. You’d go in and he’d say, “How are you?” And I’d say, “Fine.” And then he’d say, “Yes.” And I’d sit there and he’d sit there and after about ten minutes he said, well, I’d be about ready to speak after ten minutes because it was really getting very painful by then. And then he’d say, “Well that’s fine, I’ll see you in two weeks time.” And off I’d go again. So eventually I stopped going to see him, and then they sent someone down to make me come back to see him, but eventually I stopped seeing him. I carried on seeing the first doctor who was, who was good. He got very frustrated with me sometimes. You know, he would say, at that stage I had a personality disorder according to them and he would, he would do things, like saying he won’t see me if I carry on cutting myself and that would be really hard. And then if I phoned Nightlines or things like that when I was feeling suicidal they would phone the doctors because they would get worried and then he’d tell me off for doing it. But then after times he would say he could see me living in a rosy cottage in the future with children. And that seemed so unbelievable I would just laugh inside. But you know, eventually I did end up living like that for a time. And it was very good. And sometimes he would say I had to accept that life for me would always be miserable, because it would never be light and I had to get used to it, and that didn’t help. I think he was just frustrated. Because at other times he’d say, “You know, it can be good.” But always when he left you, you’d just feel dejected. You’d sort of walk along with your heart on the floor saying, “Why should I go and see him?” Even though he was trying to help he didn’t really know what to do. And may be there wasn’t anything to do. 

 

Graham describes going to his GP, who explained to him that he needed to go to hospital.

So I came back and it was a fairly sleepless night and we went to the GP the next day, and she again, sometimes they have got professionals that are superb and she was really, really good. She, she put me in a room on my own after I’d explained myself and by then, I was really quite inarticulate and articulate and my body was making all sorts of jerking movements. And she phoned the hospital and said I had to go there straight away. And by then it was sun shiny and every bright reflection was a spirit in my mind. So on the journey to hospital I was, I was hiding in the well of the car from spirits and we got to the hospital and I was seen by a psychiatrist quite quickly and in the room, he was interviewing me and then the phone rang and it was a person in huge distress. She was obviously suicidal and I immediately assumed that I was beaming evil thoughts down the phone and that I was causing her to be suicidal. So I ran from the room and hid in the courtyard. And a nurse came out and she was really nice. She was very calm and she just crouched near me and just encouraged me back in. And then I was admitted to hospital. And that was quite hard. Just because, you’re going into a large institution and you’re very distressed and you’re very confused and basic things like where you’re sleeping and how to eat and what all the other people are doing and whether you’re allowed to smoke or whether you’re not, was just bewildering. So... I just got very frightened and I spent most of the first day hiding under my bed. And occasionally nurses would gather round the bed and then give me haloperidol sort of to take which was horrible. And I didn’t want to take it and they were just saying I’d got to, because it was good for me. And yes, I was just obsessed with, with these evil spirits which I thought were changing my thoughts. Getting rid of the evil, and not touching anyone. I thought if I touched anyone especially those I loved they would be infected by evil. And I thought all I, the only thing I could do was to go to the woods and get rid of my blood. And it’s only about 6 months ago that I found out that I was sectioned then.

Graham doesn't like taking medication although a part of him accepts that when he takes it he feels more rational, he feels like a 'shadow' of himself and doesn't like being made to take it.

Even though you know intellectually that it’s there to keep you alive. It doesn’t feel like that. It feels like you’re being controlled and coerced and it’s not as though people do it in a nasty way, you know, the nurse who gives me the injection is always pleasant and she’s very good at giving me it, it doesn’t really hurt very much and the people who say I have to take my medication would be the mental health officer or the psychiatrist in a really nice way, I just don’t want to take it. I feel it pollutes the core of who I am. It’s a very strange feeling, like I feel that being on medication I’m false. And I know everyone says when you’re on medication you know, you’re rational, you’re not full of weird ideas, you can get on with people, you can cope with life. You, well you don’t always sleep, but you do better at sleeping than when you’re not. You look after yourself, but it doesn’t feel like it’s me. It feels like, I’m not an automaton, but just a shadow of what is me, and yet what is me is too horrible to think about. So part of me accepts that I have to take it. I just can’t willingly do it. 

Graham describes his mixed feelings about being on a compulsory treatment order as he hates taking medication but thinks that it is keeping him alive.

Intellectually, you know, intellectually, I can almost accept that I have a you know, a serious mental illness called schizophrenia which is, on occasion, life threatening and the only way to keep me stable and functioning is to take an antipsychotic medication. You know, that’s the bit that happens in words in my mind and says yes, I agree with that and if it was like that I would just take my pills and I would be fine. But my heart, my inner being, doesn’t acknowledge that. It doesn’t say I have schizophrenia. It says I’m a person. I don’t feel ill. Nothing about me feels ill. I have experiences which are pretty horrific but they are a part of who I am and you know, I’m not the only person who believes in evil and devils. And yet, and I hate taking medication. And it’s it feels like an affront and that’s, that’s why I ended up in hospital last time because I stopped taking medication. So when I went to, when the tribunal happened in a way, I didn’t mind that they sectioned me again, because I know if I don’t take my medication it’s likely that I’ll end up in a place where I might die. But I can’t bring myself to do it voluntarily. It’s, it’s like, taking poison willingly. So in this way it’s been okay, because it’s taken out of my hands. Okay they make the decision. I don’t have to take any responsibility to it, and someone tells me I have to do it, so I can say I’m doing it against my will. But do it and sort of, in the back of my mind a part of me says, well that’s probably quite good because it means I’m alive. But I hope it doesn’t carry on indefinitely. I would like to get to a point. I’d like to get to a point where I don’t have to take medication, but I think the professionals around me have got no intention of letting me do that. So I don’t think about it very much. 

Graham moved around a lot as a child, had to get used to different schools and eventually went to boarding school where he got on with people, although he disliked being away from home.

My Dad was in the Air Force so we moved around the country a lot, and then he started selling yachts. I lived on the South Coast. I went to a public school. ...I was quite a... separate child. But I had quite a good upbringing. In my teens and late adolescence I tended to say I had an awful upbringing but actually in retrospect it wasn’t too bad. I did a lot of climbing, a lot of sailing, a lot of walking. Depending on where we lived, we did different things, in Norfolk in was all kind of beaches with dogs and other schools it was walking along rivers and listening to punk music and trying to be rebellious and not really understanding what was happening, and just the general to and fro of growing up. You know, the sort of family moved around a lot.

 

And how did you get on at school with all this moving?

It varied. It was completely different in different places. It was quite a strange experience in the initial school I was extremely quiet. I was very confused by school and I didn’t really know how to participate. I would just sit there and do nothing. And it, I adapted to different places in different ways. When we lived in [place name], there was a whole group of us around the houses where we lived and where we, a horrible gang, did all sorts of things, smashing windows on a building site and all sorts of things and rushing round on our bikes and climbing trees and playing war games, and all the things that young people do. The next place I lived it was Norfolk and there we had almost no friends, initially anyway. And school was a complete mystery. I’d moved from one school where you wrote, the way we write nowadays, to Norfolk where you wrote with all these curly letters and things. And it was like a completely brand new alphabet and discipline was completely different. You got smacked if you stopped writing and stuff like that. So it was very strange and I just shut up there. And initially I made friends and then I stopped making friends and I spent most of the time in my memory hidden in an alleyway in the school. There was a boy with a hole in the heart, who had a blue, a blue face, and he sat at one end of the alley and stared into space and I would sit at the other end of the alley staring into space. And that was basically school then. But then I went away to public school and I wish I hadn’t, but initially, initially it was very hard, but I made a lot of friends there, and got very used to it, and it was a good place. There were lots of people I liked and got on with. I would have preferred not to have been away from home, but it was a place where there were people who I could get on with. 

Graham talks about the history of HUG (Highland User Group based in Scotland).

I think, I think certainly in Scotland, I don’t know about England so much, we’ve learnt a huge amount over the years. I’ll give an example. In the early days when I worked in Edinburgh I remember one of our members and myself, for the first time we were invited to see a psychiatrist and in those days that was such an event. You know, we went to the café and we giggled for the whole afternoon, saying what is he going to say, will he this and will he section us and all this sort of stuff. We were terrified at seeing him, and we had no faith that he would actually listen to what we were saying and we were completely shocked when he agreed with some of the things we said. There was this huge barrier. Nowadays up here certainly Now, psychiatrists refer people to HUG. They see it as a good thing. And I think we’ve grown to realise that not everyone who gets involved in what you might call the user movement has to be anti professional. Or see it as a them and us thing. Even those of us who’ve had horrible experiences tend to think that the people who are doing it, even if we disagree with it, are trying to do the best. Most people have a very... a very good motivation and actually there is so much to do that we all agree on, whether we’re mental health officers, social workers, support workers, psychiatrists, planners, policy makers, that if we just joined together we could, we could do really wonderful things. And I think that’s really good, and that’s us growing up and not being so caught on saying that all the people are bad so therefore we’re victims because we just see everybody with suspicion. We’ve grown up to take responsibility for our own views and have become much better at finding out our views. In many ways, certainly in the Highlands we have more influence than some professional bodies. But equally it seems to me that people tend to respect our views. We’re not just a group of angry people saying I don’t like you because you did nasty things. We’re finding out our views of a lot of people and expressing a reasoned, rational, logical idea of what can help us, whether is from medication to employment to ward rounds, to benefits. And we’ve grown up to find that we’re gaining a voice as a community. A very disparate voice. A, a rainbow of all sorts of voices but a voice, and... it’s quite exciting. It’s very, it’s very exciting. Because that voice hasn’t been heard for so long and there is so much, quite apart from changing things there’s so much that needs to be remembered. As a whole, there’s a whole community whose experiences are... are only just being recognised and registered. And to me some of the basic things is just getting those voices, not stored, but... there, so that you grow a history I don’t know that’s... how do you express it? You know, I’m lucky, I’ve got a job, I’ve got a house, I’ve got friends. Some of our members have had horrible experiences. They’ve been in prison, they’ve been homeless, they’ve lost all their friends, they’ve lost their houses, they’ve had no say in what happens to them, they’ve had the horrible reactions of some of the people around them and they’re living on a tiny, tiny income. And it’s such an act to gain the dignity and the courage to say I’m going to speak out about this. Not just for myself, but so other people don’t suffer this way and so that I can say things that will help people in the future. And it will bind me to people who have similar experiences to others. It’s a courageous thing to do and it’s a dignified thing to do and sometimes it’s all you’ve got. And it’s really, really precious. No one can take your voice away from you, but they can silence it. And we’re lucky here that our voice isn’t silenced. Although we’re still a small group you know. In Scottish terms we’re seen quite big, we’ve got 400 members, most of whom have had quite serious problems. The highlands has a population of 200,000. So at least 50,000 people in the Highlands will experience mental health problems at some time in their lives. So we’re a tiny, tiny group compared to the constituency we should be seeking out. But it’s a start.

Graham thinks that recovery is an unfortunate word as it causes offence to people who don't believe they will ever recover.

I think, recovery is a very unfortunate word. I wish they’d chosen a different word because it causes such offence to people who don’t believe they will ever, if you like, get better again and there’s a misinterpretation about what recovery means. I think what is inspiring is saying that we all have our own journey to make and our own interpretation to make about what illness is. I think that’s really, really good. That’s liberating and allows us, especially with unconventional thoughts to feel secure in our thoughts and have then seen as valid and to look at our strengths and what we can bring to the world instead of looking always at the failure and the impairment is really good. Where I think it goes wrong is that it sometimes substitutes itself as being the voice for all users. Which I think is wrong. I don’t think it is and sometimes I think it becomes almost, almost a religion. If you don’t belief in recovery then you’re just misguided. You can’t have a valid disagreement with recovery. Everyone in mental health has to believe in recovery. But in many ways it’s a very diffuse subject. When you start talking about the recovery model of the design of a building you’re being really stupid because it just means what improves mental health and just saying recovery model is just rubbish. And there are too many people have a value base around recovery that says the only way to recovery is certain models like getting into employment or believing in this or being free of medication or whatever, which is a judgmental, patronising way of saying people should speak. There are people who have hardened themselves. What I think is wonderful about people with mental health problems speaking out is that we have a vast range of opinions and all of them are valid. From those people who believe medication and ECT is a life saving vital treatment to those people who believing sectioning is the greatest infringement of human rights, and there’s a vitality and breadth of wonderfulness is every one expressing those things which is great. And sometimes people who are caught in recovery think that there’s one way of thinking and if you don’t think that way, then you’re misguided, you haven’t educated yourself enough and if you just listen to the disciples of recovery you would have a guided sensible view. And that I find is really offensive. What I think is wonderful is giving that belief into people having a sense of their own journey and a sense of their own strength and a sense of their own worth. That’s, that’s where it should settle. Rather than thinking it’s concerned with everything else. And I think, you know, when services start talking about recovery focus that’s fine. But often it’s just a bit of a gloss. And everyone says, recovery, they say recovery without even thinking what it means sometimes. I found that quite offensive, because it’s just taken over. It’s become, I hate the word political correctness because it’s such a stupid thing, but it’s become a dogma and that’s really, really annoying because it’s a wonderful, wonderful liberating concept which is in danger of distorting voices and not voices to be heard, just in case they don’t agree with the concept.

Graham is trying to learn what he wants out of life.

I see the professionals. I see psychologists. I see all these. And they’re very good, but yes it’s believing in the world again is the most important thing and for me, since I broke up with my wife a lot of it is brand new. It sounds strange, but it feels like I’m learning what friendships are again for the first time. I’m learning how to be a friend with people. And that’s very confusing. And I’m trying to learn what I want out of life and I’m not very sure what it is. But a lot of it is very quiet. A lot of it is just the wonder of being in the world. I suppose because I was so close to not being in the world. Because, you know, I was saying earlier that when I was in hospital, my, my ambition was to find the beauty of being a spirit. And now I’m trying to find the beauty of being in the world. And, and actually learning to believe in myself as a person who has value to other people. And I haven’t succeeded in doing that. But to try to do it is wonderful. It’s really good. And sometimes it’s terribly, terribly lonely. And sometimes you feel that there is no one in the world that can connect with the experiences you’ve gone through. But I do have some wonderful people around me. You know, when we came in, you know, I was holding a friend’s baby. You know, what can replace that. You know, having a wee child, so trusting that they want to use their wee fingers to touch your nose and your, your chin and feel your mouth, is, you can’t replace that. It’s those are the important things. And they are what keeping me going rather then… well I know drugs probably do keep me going in a way that’s different. But without that’s something to want to be a part of there would be no point in drugs in the first place.